Far Fetched - Celiac link?

Greetings all....I haven't been on this site for a while........not because I haven't been in pain with GPN. I'm so sick of it I just don't feel like dealing with even venting about it. I'm throwing something out here that might seem SO FAR FETCHED, you can't even believe I'm going there - BUT: have any of you been diagnosed with Celiac disease....? Do any of you think there's a REMOTE link between GPN and Celiac? I've made some dietary modifications recently, and - maybe I'm grasping at straws - but there has been a shift in my GPN symptoms...........ANY THOUGHTS??? Hope you don't think I'm a nut. I do experience periodic remissions......this could be coincidental and the truth will come out momentarily

hi nikki, i actually saw my dr last week and she told me that she learned that alot of neupathys can be link to celiac disease. i had blood drawn last wednesday. ill let u know. either way she asked me to research the gluten free diet and think about starting it. i have an autistic niece, my sister tried the gluten free diet with her, i know its a tough one. im waiting to see what blood work shows first.

I don’t think that is far fetched at all. I’m wondering how things turned out with you eliminating gluten products. I would think you don’t necessarily have to be diagnosed with Celiac to have a gluten sensitivity. I went to a chiropractor today who practices kinesiology. Based on my responses, she suggested I cut out wheat and sugar for a few days and see her again. She put me on Tree Antigens (I seem to trigger seasonally and now test positive for tree allergies), Omega EPA DHA 750, Ceralin Forte (for inflammation) and Ultra Inflam (2 scoops added to water for a daily shake, again for inflammation.) *Metagenics.
I had just read in a thread last night, I apologize as I don’t remember whose, that GPN is related to inflammation. I hadn’t mentioned this to her, btw. I’m going to give it a shot. Miss my pasta and pretzels already!!


I'm not familiar with Celiac but have recently been more focused on changing my diet in attempt also to relieve some of my GPN symptons. A friend of mine who is very diet concientious mentioned to me recently that certain foods such as wheat products can be inflamatory (not sure if this is the correct medical description) so I am in the process of in addition to taking my regular meds, also taking Ibprofuen and cutting wheat products from my diet. Since my symptons change daily I don't know yet if this will be effective.

I have written a few different things on the forum. One is that I believe there is a link between certain conditions and GPN, especially for those who do not have Eagles syndrome. I personally have multiple sclerosis and sjogrens which are both autoimmune diseases which cause widespread inflammation. I now manage my GPN through acupuncture and I also take many supplements to reduce inflammation such as high dose flaxseed and fish oil plus other supplements.

I have found that the drier the weather the worse GPN is. That the more humid the weather, the better it is. With my sjogren's side all my other symptoms are also worse in dry weather and better in humid. I find when my parotid glands are really swollen I will begin to get niggling and up my acupuncture.

So in a nutshell, no I don't think it is silly as celiac disease is linked to many different autoimmune diseases. With many autoimmune diseases comes neuropathies which is caused because of inflammation in most cases. My neuro tested me for celiacs about 2 years ago when I received my diagnosis of sjogren's. Apparently they are ones that go hand in hand, as if you have one autoimmune disease you have a higher propensity to have another.

I don 't have Celiac but I have Diabetes and wondered if that might have a connection. One of the

sites I looked at said one of the first things they test you for is glucose level. My BCBS nurse said

she didn't think there was any connection because of the way Diabetes attacks the blood cells. Who

knows? The way I understand it is that it is a nerve at the base of the skull being pressed by a

blood vessel and that causes inflammation. The only real cure is to surgercally put a tiny pad between

the nerve and blood vessel. Sometimes medications can relieve this but it usually comes back. Mine

came back after 6 years. If I could get it to go away for 6 more years, I would be happy.

Hi Regena,

Do you have Diabetes 1 or 2? I ask this as diabetes 1 is an autoimmune disease which would fit the pattern of our discussion on this topic. Neuropathies are part of diabetes, especially type 1. It is usually peripheral nerves it affects first BUT it also affects cranial nerves too, just look at the fact that it can cause optic neuritis which is caused from inflammation of cranial nerve II. So there is also a chance that the glossopharyngeal nerve - cranial nerve IV can get inflammed.

What needs to happen is people should have MRI's done at the time of bad flare-ups so that they can monitor active inflammation, but instead MRIs are usually done at a separate time and usually for most only to rule out things like Eagles syndrome etc. The procedure you mention comes at a high risk. All research I have read on this (haven't looked at it the last year) but previously stated that while it gave results in some people (not all) it came back on average after 5 years because of scarred tissue. They place a teflon pad inbetween. In my opinion this should really only be done if it is a blood vessel that is permanently causing the issue.

If it is an 'unknown' cause it is likely to be inflammation of the actual nerve which may be caused from various things. One being a small lesion on the brain stem which is too small for even an MRI to detect, although nowadays there are some new MRI's hitting the market that have 7 magnets which produce very clear images of minute lesions. Current MRI's are either 1.5T or 3T which simply means how many magnets. They higher the magnet, the higher resolution of pictures they can achieve. So with the slow introduction of these higher powered 7T MRI's we may see more information occurring with our conditions.

Personally for me I know mine is linked to periods of activity (inflammation) with my MS and Sjogrens. Also because there is some permanent damage to the actual nerve endings in my throat and tongue certain things like dry weather, certain drinks and foods will trigger it. So I avoid all these things (weather a little hard) as much as possible. An example is cordials trigger huge spasmodic waves of GPN, so I never drink it now. Certain softdrinks will do the same. So once I find triggers that aggrevate the nerve endings I eliminate them from my diet.

I counteract the brain inflammation by taking high doses of flaxseed oil and fish oil along with using acupuncture to quieten down the nervous system and this works well for me.

Out of curiousity is your diabetes playing up at the moment as I assume from your post the GPN is back? Are your eyes playing up?

Don't go looking for Unicorns if there is a horse right in front of you. Make sure the common things are ruled out. Get a neurologist or neurosurgeon and an MRI/MRA to be sure you are not overlooking the surgical cures... I avoided surgery for 6 years by thinking it was this or that reason causing the problem. My neurosurgeon took one look at my 2007 MRI last month and he immediately and correctly diagnosed the surgical issue, and he fixed it 10 days ago. Thank God he had no rose colored glasses!

That is exactly the issue I am facing. Six years ago when I had the first episode, I went to Dr., emergency room, ENT, had exrays, swallowing test. No one had ever heard of anything like it before. Diagnosed throat fungus, reflux and some said they simply did not know. Then I saw a neurologist. He knew what it was but said he knew I didn't have it because it was too rare. He treated me for it anyway with the meds that was suppose to be for it. It went away for six years. Now it is back and I am back to them wanting to treat me for anything else. Finally, I will be seeing a neurologist in about 2 weeks. I guess he too will probably not believe it is GPN. I will insist on an MRI and hope they find out what is going on and do something.

Yes you NEED to insist on an MRI. I canot believe this hasn't been done, especially gievn you have seen a neurologist!!!

You need to have Eagles and other causes ruled out. If it's not Eagles, you need MS and other autoimmune diseases ruled out. MS and Sjogren's can both cause this, as can tumours and enlarged blood vessels, but in order to know where to start looking you need to have an MRI first to rule out any obvious links and then if that is clear start having blood tests like ANA, DNA, ESR, SSA, SSB plus quite a few more to see if anything immune type comes up and whether inflammation is present. If you haven't done this yet, this is what you should be doing. You start at the top with MRI's and work your way down the list.

There is ALWAYS a cause but it's a matter of working it out and in the most obvious or possible cause backwards.

In regards to swallowing tests, yes some people have them done. I have in the past for my MS issues because it can and does cause issues with this side but that is unrelated to GPN. Swallowing issues do not cause pain like GPN but does cause discomfort and stress. Given pain is very subjective they were probably just wanting to rule out it wasn't caused by a swallowing issue...

Thank you, Kaz, for that info. I will take it to my new neurologist. The swallowing test was ordered by the ENT and he was convinced it was caused by a lesion or infection of the throat. This time he ordered an antibiotic just in case it might be an infection of the throat he wasn't seeing. It got worse though so he is the one who referred me to the neurologist. In the mean time I asked him to give me Tegretol and it has gotten better. Now it just feels like a piece of glass stuck in my throat if I swallow anything cold, strong in flavor or rough. I want a big glass of ice water so much, I can't stand it. I will take this as far as I need to go. Thanks for all the info.